Category Archives: Pittsburgh

at the moment between inclusion and erasure

Japan massacre

You know that feeling you get when you realize you’re among like-minded souls who really, really get it, who understand what should be so evident and obvious to everyone else?

It’s an amazing feeling, isn’t it?  Understanding and acceptance wrapped up in group hugs and warm fuzzies.

It almost doesn’t matter what the it happens to be — and no, for once I’m not talking politics.   (Well, not really.)

On Wednesday, I spent some time at a national conference being held here in Pittsburgh with people who are passionate about making cultural organizations more accessible to people with disabilities. At this conference, guide dogs, wheelchairs, and assistive technology were the norm as attendees navigated the hotel’s conference rooms.

I was at the conference for work-related reasons, but it didn’t really feel like work. As a parent of a teenager with autism, I couldn’t help but remember The Boy’s early years — the black hole years, as I refer to them. The days when I couldn’t even take my toddler twins to storytime at the library because while The Girl would sit quietly, rapt and enthralled, The Boy would be a constant blur of motion, running for the door, making distracting noises.  The idea of going to a museum or a movie or a musical was absurd; hell, we could barely go to a park five minutes away without half a day’s preparations — and usually the exhaustion of chasing, chasing, chasing after The Boy or dealing with the stares or the inevitable meltdown became too much.

I realize now how much we truly missed out on, and it makes me angry and sad. Opportunities and experiences that are childhood mainstays were forever lost to us because there weren’t accommodations to make such outings easier or meaningful ones for our family — and especially, our boy.

Things have changed a lot in the 12 years since those dark days — in our family and, as I realized yesterday, at cultural organizations across the United States. (And I mean from all states; one session seemed like a roll call of delegates with people representing states from Montana to Massachusetts and everywhere in between.)  There’s exciting programming happening — and Pittsburgh is certainly taking its place among them with a growing number of sensory-friendly performances and accommodations at the ballet and symphony and festivals.

This post could end right here if I didn’t happen to check my phone during a break between conference sessions.

While daring to feel that things were improving, to hope for a day in my lifetime or my children’s lifetimes when people with disabilities are fully included and (dare I dream?) accepted in our society and (dare I wish?) not shot when others misunderstand the reasons behind their behaviors — my full heart suddenly felt punctured, like a water balloon.

There, on the conference floor amidst the guide dogs and the wheelchairs and the advocates and the people championing the needs of people like my kid, there I stood reading my friend Elizabeth Aquino’s post “Erasure” which was prompted by  Emily Willingham’s Forbes article “This Is What Disability Erasure Looks Like.”

I read both posts, which are vehement responses to the July 26 massacre in Japan that killed 19 people and left an additional 26 injured at a residential care facility for people with disabilities. A deliberate slaughter, this attack was, and one that was forewarned in a letter by the perpetrator in chilling detail.

“I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities,” the letter said.

[His] letter said he could “wipe out a total of 470 disabled individuals” by targeting two facilities for disabled people during the night shift, “when staffing is low”.

“The act will be carried out speedily, and definitely without harming the staff. After wiping out the 260 people in two facilities, I will turn myself in.”

As Emily’s article for Forbes states, this heinous act came on July 26, exactly 26 years to the day that the Americans With Disabilities Act was signed in 1990.

Which was the focus of the conference I was at, where we were talking about accessibility and inclusion.

I felt, at that very moment, stuck between two opposite forces: One that embraces and welcomes people with disabilities, including them in programs that were once inaccessible, and the other hell bent on erasing people with disabilities from the face of the earth.  

The danger is becoming complacent about stories like the massacre in Japan, of turning away or not reading because “it’s too much.”  Make no mistake: this massacre may have happened in Japan but there’s every reason to believe that this could have — and certainly has the potential — to happen here in the United States.  As Emily wrote, one only needs to look at the incidents that have already occurred.

  • An autistic man sitting on the ground, playing with a toy truck, and being the real target of the bullets that found their way to the black man trying to protect him.
  • Presidential nominees who mock disabled people and the people who defend the mockery.
  • A society that thinks any behavior that’s not “normal“ deserves to be publicly jeered.
  • Widespread abuse of and violence against disabled people, around the world.

We cannot and must not be complacent about this.  We owe it to all people with disabilities — the ones who came before and the ones who will come afterwards — to include them, to celebrate them, to elevate their stories and their lives against the evil that would silence their lives.

It is the very least we can do in remembrance of 19 people erased from this world.

Please consider taking a few moments to read in its entirety Emily Willingham’s 7/27/2016 article in Forbes (“This Is What Disability Erasure Looks Like”) and Elizabeth Aquino’s blog post “Erasure.”  Also worth the read is Ellen Seidman of Love That Max: “The massacre of people with disability and what parents can do.”

Between the Dark and the Daylight: Embracing the Contradictions of Life, by Joan Chittister

Between the Dark and the DaylightInsomnia and I have become rather close lately. Granted, we don’t see each other every night —  it can be weeks or even months between our unhappy hours — but suffice it to say we know each other well.

Our family has had an incredibly difficult year. Those of you who are regular readers here (and, of course, family and friends who know us personally) know there isn’t a single area of our lives that hasn’t undergone some sort of major, significant life-changing hit in the past 12 months. Our work, longtime friendships, health, finances, issues with the kids … each of these has been impacted to the point that we’ve been questioning everything — our past decisions, our present realities. It is the darkest stretch of time since what I refer to as “the black hole years” of The Boy’s autism diagnosis 12 years ago.

That doesn’t always make for a restful night’s sleep. Add into all that our country’s unending violence, relentless heartbreak, and a downright nightmarish presidential election season that has tempers blazing, including that of one unhinged, dangerous and completely unfit candidate, and it’s no wonder I find myself up at night.

I’ve been seeking words of wisdom, binging on current and back episodes of “On Being” and most especially craving spiritually-focused books.  Not religious works, because religion doesn’t necessarily work for me these these days, but books that have the ability to ease the tension (if only for the few brief minutes of reading before bedtime), provide some insight or new perspective. A spiritual salve, if you will, for navigating the hurts of this scary, confusing, uncertain world.

As soon as I started Between the Dark and the Daylight, it was like Joan Chittister was writing just for me. From the first two pages:

“There is a part of the soul that stirs at night, in the dark and soundless times of day, when our defenses are down and our daylight distractions no longer serve to protect us from ourselves. What we suppress in the light emerges clearly in the dusk. It’s then, in the still of life, when we least expect it, that questions emerge from the damp murkiness of our inner underworld. Questions with ringtones that call the soul to alert but do not come with ready resolutions. Questions about life, not about the trivia of dailiness. The kind of questions to which there is no one answer but which, nevertheless, plague us for attention if we are ever to move through the dimness of life’s twists and turns with confidence.

These questions do not call for the discovery of data; they call for the contemplation of possibility.”

I read those words — yes, I confess, sometime around 3:30 in the morning — and was instantly awake. This is not a book about conquering insomnia, but rather one that addresses the dark issues of the soul. I don’t mean “dark” as in a harmful or dangerous way. More in terms of the anxieties and complacencies that can be so powerful in preventing us from moving forward in our lives.

In this book, it’s not necessarily what Joan Chittister is saying — it’s how she says it.  There’s a gentleness and calmness to her prose that is incredibly soothing. Perhaps that shouldn’t be surprising as Joan Chittister is a member of the Benedictine Sisters of Erie, PA. (That said, by no means is this book heavy-handed with theology; quite the contrary.)

The author of more than 50 books, she has an extensive, impressive biography spanning decades of accomplishments as an “outspoken advocate of justice, peace and equality — especially for women world-wide.” (source: Joan Chittister).  And, best of all, she was born in Allegheny County, so she’s a Pittsburgher!

I’m almost embarrassed to say that I hadn’t heard of Joan Chittister before discovering Between the Dark and the Daylight while browsing at the library. But I strongly believe that books and their authors find us at the precise time we need them, and Between the Dark and the Daylight is definitely one of them. Highly recommended, especially during these troubled times for so many of us and our world.

Between the Dark and the Daylight: Embracing the Contradictions of Life
by Joan Chittister
Image 
2015
176 pages

99 Days of Summer BloggingThis is post #65 of 99 in my 99 Days of Summer Blogging project

listen to your mother pittsburgh 2016, the official show photos

I’m still in awe of the incredible experience that was Listen to Your Mother. All the emotions came flooding right back as soon as we received the official show photos on Monday.

We need to wait a little bit longer for the videos, but I promise to share them as soon as I get the official word.  Till then, here are a few images that capture the excitement and joy of the evening — with credit given to Ashley Mikula Photography for each one.

LTYM - Melissa on stage rehearsal 5-6-2016

Me, making the other ladies in the cast laugh during dress rehearsal.

LTYM Pre-Show Toast LTYM - Pre-Show Toast 2

Pre-show toast.

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Walking onstage to applause and Sara Bareilles’ “Brave.”

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Onstage, sharing the most personal story of my life. Perhaps the most nerve-wracking and empowering five minutes I’ve ever experienced.

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Audience reaction during my piece.

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Standing ovation by more than 400 people.

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Final bow.

99 Days of Summer BloggingThis is post #45 of 99 of my 99 Days of Summer Blogging project. 

 

many grains of sand (40/99)

Before leaving work this afternoon, I stopped by the Sand City Spectacular tent again, this time to see the artists put their finishing touches on their masterpieces.

Today was the last day of this competition (which I wrote about on Wednesday) and also a celebration to kick off Pittsburgh’s bicentennial.

The final products are amazing.  There are five sand sculptures, so intricately detailed. I think I matched the right photos up with the right sculpture (although I’m not quite sure).  I hope so.

Sandcastles - Andy Warhol 2 - 7-8-2016Sandcastles - Andy Warhol 1 - 7-8-2016

Sandcastles 2 - 7-8-2016Sandcastles - 2 - 7-8-2016

Sandcastles - 7-8-2016 2Sandcastles 7-8-2016Sandcastles 6 - 7-8-2016Sandcastles 5 -7-8-2016

Sandcastles 4 - 7-8-2016Sandcastles -3 - 7-8-2016

In the aftermath of this difficult, tragic, and ugly week, it was nice to spend just a few moments amidst beauty.  And it occurred to me that these works of art are — when you really, really think of it — individual grains of sand that together make something quite remarkable.  Individual grains of sand that ten people spent more than 50 hours this week to shape into something awe-inspiring.

I know it’s naive to hope for a similar transformation for this broken world of ours. I’m not sure if that’s even possible.  Still, I believe we have to try, to do our part. At lunch today my coworkers and I talked about the events in the news. We talked about whether things were getting worse or if these tensions had always existed but we were just seeing more of them. We talked about how helpless we felt and how fixing this seemed insurmountable. It’s such a layered, complex issue, we said.  We wondered out loud how one even could even begin to start.

It starts right here, I said, with each of us.  With being willing to engage in these kinds of conversations. I said this was pretty damn transformational in and of itself, given that we were three professional women– one who is African-American — having lunch and talking about race. We weren’t going to come up with any solutions at our lunch table — we knew that. But we could say that we saw another person’s reality.  We could say that we see each other and at the same time, we are afraid of saying the wrong thing, of offending someone.

And we did … we said all that. We really did.

What difference can one person, one grain of sand make? Sometimes it doesn’t seem like much.

Yet we’re all that is holding together this world. This incredibly fragile creation.

Sandcastles 5 -7-8-2016

99 Days of Summer BloggingThis is post #40 of 99 in my 99 Days of Summer Blogging project. 

 

sandcastles in the city (38/99)

Sandcastles 1

One of the things I love about Pittsburgh is the abundance of creativity and fun in this town. It’s a city that embraces all things quirky and cool, surprise and awesomeness, creativity and innovation. The ‘Burgh is all of those things.  You can have a crazy, original idea and here, moreso than any other place I know, it can happen.

We’ve knitted bridges and put a gigantic rubber duck in our rivers. We have a festival — on a bridge, naturally — celebrating pickles.

We do some pretty cool things in Pittsburgh.

The latest? Sand City Spectacular.

Pittsburgh is celebrating its bicentennial this year — we were incorporated as a city in 1816 — and as part of the festivities, we’re hosting the International Master Sand Sculpting Championship in Schenley Plaza, right in front of the Library. Ten master sand sculptors are working in teams of two in order to create five incredible masterpieces celebrating Pittsburgh. They’re from seven different nations—Canada, Japan, Ireland, Lithuania, The Netherlands, Russia and United States.

They started their creations on Saturday and they’re required to finish by Friday.  I stopped by to check it out on my lunch hour and it was pretty amazing!

This one is “Dear Andy” — in honor of Pittsburgh’s own Andy Warhol.

Sandcastles - Andy Warhol 1

And here’s the other side:

Sandcastles - Andy Warhol 2

Here are some of the other sand sculptures. This one below is “Pearl of Pittsburgh.” You can see that they’re working from a picture or a sketch of what the final product will look like. Sandcastles - Pearl of Pittsburgh Sandcastles 6 Sandcastles 5 Sandcastles - 4 Sandcastles 4 Sandcastles - 3 Sandcastles 2My pictures don’t capture anywhere near how detailed and how massive these are. You have to see for yourself.  They’ll be here through the weekend.

Visit Sand City Spectacular for event information (there’s a free Family Fun Festival this weekend), sculptors’ bios and photos of their work, and a FAQ.

99 Days of Summer BloggingThis is post #38 of 99 in my 99 Days of Summer Blogging project. 

sunday salon/ currently: reading, writing, blogging … and possibly hiking (28/99)

Sunday Salon banner

After a much busier-than-usual week (two work events, two get-togethers with friends), I’m feeling the need for some downtime.  Nothing is on the agenda today, my preferred way to spend a Sunday. I’d also prefer spending it on the deck, but since it’s a few degrees shy of 90 as I type this, indoors in the a/c seems to be the better option.  There’s the usual straightening up/cleaning to do around the house (which may or may not get done) and meal planning for the week.

Summer Reading … 
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Since my last visit here in the Salon, I’ve finished three books: LaRose by Louise Erdrich, Shades of Blue: Writers on Depression, Suicide, and Feeling Blue, an anthology edited by the amazing Amy Ferris, and Felicity by Mary Oliver.

Of the three, Shades of Blue had the most impact on me and has earned a spot on my Best Of list for 2016. The honesty and courage of these writers as they share their personal experiences with mental health, addiction, depression, suicide, and grief is incredibly moving.  There’s something in every story that connects with you, which is the point.

Modern LoversI need to spend some time with Modern Lovers today. I’m reviewing this one for the Post-Gazette and that deadline is approaching quickly.  This is better than I expected; I judged it by the cover and immediately thought “fluffy beach read.”  It is a bit lighter than my usual fare, but sometimes you need that. And after this week (and this month’s depressing news cycle), I do.

So far I’m up to seven books for the library’s Summer Reading program.  (Magazines count for this; three of my “books” are actually periodicals.)  My goal is 20 and I’d like that to be heavier on the books than magazines.

Writing … 
The Girl starts a week-long Teen Fiction Writing camp tomorrow.  I would have loved this when I was her age. She did a similar program last year with this organization and really liked it.

Taking a Liking to Hiking …
The Boy is participating in a fabulous day camp program this summer for teens with Asperger’s. It emphasizes social skills and a lot of outdoor time.  They’ve been doing short hikes (approximately 4 miles, which certainly doesn’t sound that short to me). Surprisingly, he’s become very interested in hiking, trails and especially streams, and has expressed interest in continuing this when camp is finished in two weeks.

Fortunately, Pittsburgh is a great area for hiking so I’ve been looking into some possibilities for him and I to do some occasional short hikes together.  (If any local readers have suggestions, I need them as this is — quite literally — new territory for us.)

Blogging
#99DaysSummerBlogging is still going strong.  By the end of this week, we’ll be 1/3 of the way finished. (And so will summer!)  I’m slightly revising my approach to this project, though. One of my main motivations for doing this was to actually write every day. Admittedly, that’s been difficult as some posts need a few days to come together and I’m not a fan of posting something just for the hell of it.

I’ve realized that writing every day doesn’t mean the same as writing a brand new blog post and publishing it every day.  I’ve decided to give myself permission to write some posts in advance. That way, those can be pulled out of Drafts and published on days when I want to spend longer on other posts — or even other writing projects.

And speaking of which, a review is due soon, so back to my book I go.

99 Days of Summer BloggingThis is post #28 of 99 in my 99 Days of Summer Blogging project. 

 

 

Listen to Your Mother Named as Best in the Burgh! (27/99)

LTYM - Poster

This must be what it’s like to win an Emmy.  We’ve had exciting news this week for Listen to Your Mother Pittsburgh, which I was thrilled to be  part of this year along with 13 other amazing women and writers.

We’ve been honored Pittsburgh Magazine by with a Best of the Burgh award in their Kids and Family section!

We made the audience “laugh, cry and open up about their own experiences, which is the organizers’ goal.”

Indeed it is, along with raising money for a deserving local nonprofit that serves women and children. (This year’s recipient was Jeremiah’s Place, a relief care nursery in Pittsburgh.)

Take a bow (another one), ladies.  All you who were in the inaugural cast last year and those who shared the stage with me this year and those behind the scenes and especially LTYM creator and founder Ann Imig … congratulations to all of us!

99 Days of Summer BloggingThis is post #27 of 99 in my 99 Days of Summer Blogging project.